Fascinating ...

http://www.immunizenc.com/images/PDFs/06%2001%202009%20Alternative%20Schedule%20Memo.pdf



In researching an alternative vaccination schedule, I turned up this gem - a note to physicians in North Carolina stipulating that, if they do not adhere to the guidelines set forth by this particular board, despite parental objections, they may be refused access to state supplies of vaccinations. Now if that scenario doesn't scare you, I just don't understand.



{The alternative vaccination schedule is one proposed by Dr. Sears, and is actually an attempt to mitigate any damages that vaccines MIGHT present to the developing infant. It seems like a wonderful compromise between the known and the unknown regarding vaccines - keep the good they do and reduce the risk to the still-developing child, especially during times when they are most vulnerable.)

Redefining "Normal" ...

Emma is appearing to be on the mend. She is moving around, a very good sign following 22 days of general inactivity. The hospital asked for permission to vaccinate her. Such a normal request, right? When there has been so much that is not normal happening with your child, it is easy to be blind-sighted by the normal. Up until baby #5 was born, I never questioned the whole vaccination routine. If the doctor said it was time for a shot, baby received said shot. But as I have evolved in my adult life into ... well, into someone who does not just do simply because we are told to do, I have come to question many things, vaccinations being one. (The whole issue with the Gardasil vaccine, involving lawmakers making it mandatory for children -our children - to be vaccinated, did nothing to make me feel less insecure when it comes to this issue.) I truly am on the fence when it comes to vaccines. I can see both sides of the issue, especially when it comes down to what is best for the majority versus the small minority that might suffer complications.

But, when you are part of that small minority... when you are the one who has to suffer, to "take one for the team" ... when it is your child that is suffering, and your family that must cope... I just believe we need to preserve the element of choice, the right of the individual parent to decide what risks he or she is willing to take for the sake of the child. When someone stands to make a buck, good judgment tends to take a back seat to the dollar signs that are waving in the breeze. If we have those in authority making laws that are in favor of things they stand to profit from, the potential risks may be great. When we lack trust in those who rule us, fear abounds. And that is a far greater threat than a virus.

If our school system has done all that it purports to do, then the populace in this country should be educated enough to make informed decisions. And that is what I will try to do as I research vaccinations and the potential risks to my child. But please do not ask me to give consent over the phone for something just because this is how it is done. You may have received my consent unflichingly just a few years ago. But now ... I don't think so.

Happy Birthday, Baby Boy ...

"6"? Really? Wow! In the span of six short years, you have turned my hair a shade of silver. That's right, I skipped gray and went right to silver. But when you throw your arms around me, and say, "I love you, Mom", you melt me. And when you rub your blanket under your nose, you melt me. When you wrap that blanket around me while we watch a video, and query, "Are you alright, Mom?", you melt me. And when you laugh - that infectious laugh, the one I've heard about, read about, one that so few possess, a laugh that belongs to a person who revels in life, a laugh I myself lack - you melt me. When you are slaying the dragons in our midst with your sword, flinging yourself into furniture with a tremendous shout of victory; when you are slam-dunking basketballs in your room and the ceiling below trembles in your quake; even when you are banging on your sister's door, demanding entrance so you can do something naughty, like steal a puzzle piece from her desk just so she will take chase - yes, even then, you melt me. Because you are sweet, so sweet, and too adorable for words. And when I gaze upon you, I see life. So while you terrify me with your sense of abandon in all things, you melt me. Happy birthday, baby boy.

Just Another Day in the Life ...

I spent a long Saturday sitting in the NICU, with the baby tightly grasping my finger. She seems to be doing better, although there is still an area of concern in her belly. She is trying to come out of her drug-induced sleep, scrunching up her tiny face, furrowing her brow, trying oh so hard to open her eyes. Her movements are so normal, so ... baby-like ... that it is easy to forget the numerous I.V. lines that infiltrate her small body, the tube that is inserted into her throat, filling her lungs to their proper capacity, and the direct line that feeds into her heart, carrying nourishment and the necessary germ-fighting drugs.

Well, it is easy to forget for the moment - that is, until you refocus and take in the entire picture ... the little body lying in the plastic bubble, unable to be held, head held in place by a bean bag so she does not dislodge her tube. It is then that you realize there is nothing baby-like about this picture, this reality, this horror show. And you want to run, never return, never see the sights of this place again. But you don't. You sit, and you offer comfort in the only way you have - one finger of your hand, extended through the portal of the plastic bubble, grasped ever so tightly by the little hand that lies within. And you open your book and settle in for day #78 of your journey from there to here ... and you wonder "to where"?

Instability, Uncertainty, When Will This Ride End ... And How?

7 p.m. - "This is the doctor from St. Chris. I need to let you know of a change in your daughter's condition. She may need surgery."

8:30 p.m. - "Hello, this is Emma's mom. Can you give me an update on Emma?"
Doctor: "We think she may have a stricture in her intestines, which could perforate. Or she may have C Dif Colitis, so she is now on another antibiotic. Tests will be repeated at midnight. Would you like us to call you then?"
Me: "Yes, please."

Putter, putter, putter ...11 p.m., 11:10 p.m. , putter, putt, putt, putt ... 11:30 p.m.....................

1 a.m.
"Hello, this is Emma's mom. Someone was going to call me with the results of my daughter's tests."
"Hello, this is the doctor you spoke with earlier. Emma's X-Ray looks better, and her blood gases are very good. So, for now, she is stable."

6:15 a.m.
"Hello, this is the doctor from the NICU. Emma's X-ray shows a worsening of the strictures in her bowels. Surgery has been notified. How long will it take you to get down here? I will call you back with the details."


9 a.m.
"Hello, I have been waiting for a return call from the doctor concerning my daughter's surgery."
Nurse: "Surgery? She is not scheduled for surgery."

After over twelve hours of (my) not breathing, it has been decided that the air in Emma's belly may be able to be removed by a suctioning tube. Her lungs are not compromised at this moment, and there is no perforation of air into the abdomen, as noted on the X-Ray. Her platelets did drop, but not as precipitously as when she first fell ill. This could account for the blood in her stool. So we wait. The children and I have a bag packed. It is difficult to just go, because two of the little ones will not be allowed in. And then what would I do with them? This roller coaster ride is slowly killing me. I often think of Emma, wondering how it is for her, praying she is not in any pain, wanting there to be an alternative ... but wanting that alternative to be all of us at home, happy and healthy.

Huh?

Asked of the attendant in the cafeteria at the hospital: "Excuse me, where is the ketchup?"
Answer: "Over there, with the other condominiums".


Getting my "Affadavit for Intent to Homeschool" form notarized:
Notary asks me, as she glances at all my children, "Boy, I bet you're glad when school starts up again".
(I had no clue what she was saying at first. I thought she was referring to the fact that other people's children would be in school. Shouldn't she have read my form?!!)


Finally, I hand the forms for the new school year in to the district, to the parties responsible for monitoring that I am in compliance with the education laws in this state. I tell the woman that, this year, I was filing one form, in lieu of one for each child, to cut down on paperwork as well as notary fees. I ask her if this is acceptable. Her response? "I have no idea."

Home Again, Home Again ... Jiggety, Jig

I came home after 8 days at Emma's side, cleaned the house, spent some time with the other children, and left again for three days. Life has been a blur of long drives, hospital visits, stops at the chapel to pray a bit, and cleaning. Is Emma better? Slowly, she seems to be making a recovery. There are still signs of the illness that ravaged her body - her abdomen is still quite distended, she is still on antibiotics, and they are still performing tests at regular intervals to detect any sign of a relapse on her part. But the good news is she is off the oscillator, and they are weaning her off the drugs that kept her heavily sedated so that she would not fight the oscillator.


Witnessing your baby's recovery from sedation is not a pretty sight. She would tear at the endotracheal tube, kick her legs, and scrunch up her face in anger. But it is far less frightening than the screams of the babies in the NICU who are coming off the in utero "high" induced by their mothers' drug use. That is a horrid shrieking that has no end, a cry that you are sure must stop at some point, must definitely be punctuated - eventually - with a gasp for air ... and yet isn't. Oh, the sounds of the NICU can be haunting. And the sights can be even worse.

But there is something about knowing how much fight there can be in such a little body - the sense of spirit or soul that must be in there to show such spunk, such character. I pray each and every day that Emma will join our family, in our home, that we may be blessed to see her grow, to truly meet the soul that lies within this tiny package, the one that has endured through unimaginable trials at such a young age. But I know I will never forget the Emma who existed to me solely through a protective plastic enclosure, the Emma I could only touch through tiny portals, whose fingers would curl securely around my finger - the Emma I could not offer comfort to in the traditional manner a mother would, by holding and rocking, but who would acknowledge the comfort of my stroking her tiny, fragile head by calming herself as shown by the machines monitoring her heart rate and respiration. That Emma has changed my being - my soul - forever.

A Missed Milestone ...

Happy 10th birthday, my "youngest twin". You are lazy, sloppy, and completely at peace with your lack of motivation - but you are also loving, kind and brilliant, so I forgive you! I am sorry I am not there to share this day with you.

Love, Mom

There is Nothing Sweet About Parting ...

The little ones came to visit me today. It was wonderful to see them, but terribly difficult to say good-bye. My 5 year-old's lips trembled as he said, "I love you, Mom". I am so torn between my responsibilities at home and being close to Emma. I know she senses my presence - I speak into her ear, whisper to her, tell her to keep fighting, will her to not give up. She grabs onto my finger and squeezes ... It is not my imagination. I see her heart rate go up, her respiration increases, and she squeezes my finger. She is in there, in that tiny little body, with so many I.V.s, and so many bruises from all the I.V.s that came before. Child abuse? Sometimes I do wonder. But where does one draw the line? If it were your little girl, lying there so sick, so helpless, would you just do nothing? Could you just do nothing? Emma is surrounded by other little ones, all belonging to someone - someone who is hurting, someone who is filled with despair, someone who had dreams of holding a tiny little baby in all its perfection. Have we all chosen the wrong path? Are we selfish in our desires to see our babies live? Is what we are allowing to be done to these infants for us, more so than for them? I have no answers for these questions - only the questions themselves. And the knowledge that when I speak into my daughter's ear, she does, indeed, squeeze my finger.

Another Rant ...

As I sit next to Emma, her tiny hand wrapped around my finger, willing her to fight, fight, and fight some more, my eyes wander to this other isolette nearby. In it lies a tiny infant, smaller than Emma, yet one whole month older. His parents are about 17, and they are staying in the Ronald McDonald House, too. Now, a 17 yo unmarried couple, with no means to even take care of this infant (the mom shared this information with me) are staying together in the RMH - together. Please allow my rant to begin:



The social worker at the hospital point blank asked me how homeschoolers can even think of educating their own children (15-year-olds, was what she said) when they are ill-equipped to teach complex subjects like Calculus. I replied that, as a homeschooler, I want to teach my children - first and foremost - how to learn, so that they may learn anything they want, by teaching themselves. This is NOT to exonerate me from the responsibility of teaching them. I just believe if we equip our children with a love of learning and the right skills, then our job of actually teaching them is easier. And, in many ways, our job should be to teach them how to learn. After all, life is constantly requiring us to master new things, and we can not possibly teach our children all there is to know. Plus, how great a job is the school system doing teaching 15-year-olds Calculus, anyway?



Now this same social worker gave the teen-age mom baby clothes, has promised to provide her with a crib, diaper changer, and vouchers for diapers, formula, and wipes. The mom said it was the hospital's "responsibility", since she was without the means to provide these items. Now, a teen-age mom can expect the government to provide for her baby, put her up in a room (with her boyfriend, both under-age, might I add) for months at a time so she can be near her baby, and continue to provide for the baby's needs after he is released from the hospital, BUT I, as a married, taxpaying, insurance-carrying citizen of the United States of America should have to fight for the right to CHOOSE HOW MY CHILD IS EDUCATED -while the public school system is consistently failing our kids, teachers are arrested for assault against students, and kids know more and care more about fashion and pop culture than they do about the Founding Fathers of the very country they live in????



I am not advocating taking the baby from the 17-yo. But, it is almost noon, and she has yet to wake. (Her room lies directly across from mine at the RMH). I have been sitting with Emma since dawn. I have been watching as her baby cries in his isolette. Does she realize how difficult life is going to be for at least a period of time when her baby comes home, when there is not a nurse in sight to provide the comfort any small baby needs, but especially a tiny preemie with special needs? There will be no lounging in bed 'till noon. The gov't can give her all the baby clothes, diapers, and formula the child needs, but what the child needs more than anything is a parent who is aware of WHAT THE CHILD NEEDS.



How dare someone question the right of a parent to choose how to raise a child when they are of the means to raise a child, and then provide for every need another person has because they have no means to raise a child! There has to be a way to provide for the needs of one, without threatening the rights of another. And the answer, I believe, lies in better education for social workers, so they stop spouting politically-charged doctrine concerning education, homeschooling, and the rights of the indigent. Re-educate them on the tenets of the Constitution and the Bill of Rights, on how this country came to be, of the intentions of the Founding Fathers. Remind them that being able to do for one's self and one's family are time-honored traditions, and honorable qualities, not weaknesses that require government intervention.

THY will or Thy WILL ...

Sitting in Church on Sunday mornings, while the congregation would recite the Our Father, I wished them to slow down, reflect on the words they were saying. I do not believe it is a prayer through which one should rush. It is deep, meaningful, powerful - possessing many of the attributes we ascribe to God himself.

In particular, the phrase, Thy will be done should not be easily glossed over. I often flinch when it is enunciated, Thy will be done, instead of Thy will be done. Now, I am not a Biblical scholar, but I do believe that phrase is meant to capture our ... yielding to God's ways, God's intentions, God's plan, that which is beyond our understanding and control. In this instance, Emma's very life.

I prayed the Our Father repeatedly yesterday (In English and in Latin, just to cover all my bases), quite possibly the worst single day of my life. (How many times have I said that in the past two months?) And every time I came to Thy will be done, I realized the paradox of the situation - if I truly believed in what I was praying, then there is the very real possibility that His will may, in fact, not be what I want. That is why it is HIS will.

When the direness of Emma's current situation became clear to me, I asked that she be baptized. The Pastor was a wonderful man, warm and understanding, having lost a premie himself. He had also homeschooled his children, and started a small Christian school as an alternative for parents who feel unprepared to homeschool through high school. As he prayed for Emma, he said, "And let us remember, it is Thy will that is to be done ... ." I told him how ironic it was to me that he chose to emphasize that particular phrase, considering all my musings on it during the morning and afternoon hours. I truly felt a fellowship with this man, as though he had indeed been sent to assure me of my belonging in a world I oftentimes feel separate from, of others having walked this path before me and survived - and that it will be HIS will that is to be done, and that this is part of His will, whatever this may be.

I have a Feeling ...

that Baby Emma is going to be a picky eater. She just got to full-feeds ... again ... and now ... feeds stopped, antibiotics back on, X-rays round the clock, blood work, blood work, and more blood work. And here I sit, alone, in the Ronald McDonald House - waiting, praying, waiting, praying. She may very well need surgery in the next 24 hours, to remove part of her intestine. I knew this was a possibility, I knew the dreaded phone call - the one in which the doctor says, "I think you had better come down here" - was a distinct possibility. But when it actually came ... when it actually came ... well, it actually came.

There is no food or drink allowed in the rooms here, But I have not eaten in many, many hours, and going to the communal dining room is just not something I can do at this point. So I am illicitly drinking an iced tea whilst eating some chips and a candy bar - how is that for nutrition. I am feeling slightly naughty, while at the same time carelessly flaunting the rules. This place is beautiful, and I pledge nary a chip crumb will fall.

During shift change, the nurses on the NICU unit ask all parents to leave the unit for the 45-minutes during which they "give report". I had the pleasure of sharing the waiting room with two young "couples". I use that term loosely because there was not much "couple"-like between them, except the "coupling" one girl (dressed as if she were going on a date to a sleazy bar than visiting a critically ill infant) was trying to accomplish as she teased and repeatedly tempted her partner. He checked his voice mail and text messages constantly, apparently because, "Hey, Baby, the girls want me". Of the other youngsters in the room, the male watched The Simpsons, and the female was checking out her My Space page.

My question is, do they realize the severity of the situation at hand? I am assuming each couple had a critically ill or just very premature infant in the unit. How can they be so ... words fail me. I cannot describe with sufficient accuracy the lack of concern in their demeanor. Perhaps it is my short-coming, a failure to understand the difference in socio-economic circumstances that leads one to handle crisis situations with more ... aplomb?! For me, I just keep praying that I am worthy enough for Emma after all that she has gone through, each needle-stick, every X-ray to check the position of the tube shoved down her throat, the hole in her septum from the tube that was in there, every time they have cut into that tiny body and it has caused her the slightest discomfiture. Will I be good enough for her? Will our home life make up for many weeks, months, possibly more that she will spend on oxygen, with a compromised immune system and lungs that are diseased so early in life?

The next 24- to 48-hours are critical. But then, so is the rest of her life. So, put your hair up, dab on some rouge, show some cleavage ... But if and when Baby makes it out of the NICU - and hundreds of thousands of dollars have brought her from the threshold of death to the threshold of your humble abode - are YOU worthy of midnight feedings, colic, RSV, and the host of other threats that Baby will encounter easily within the first few months at home? I sure hope I am.

The Funny Pages a la My Kids ...

9 yo son watching me scramble some eggs: "So, the white part is the food and the yellow stuff is the chick, right"?

Me: "Right. The albumin and the yolk. The albumin is exactly what the baby is low on right now, and that necessitates all the blood transfusions."

9 yo son: "But how does that gooey white stuff and the yolk form into a chick - I just don't get it. Is that because the rooster sits on the eggs and does something to them?"

Mom: "Yes, it is the same with human babies."

9 yo son: "Huh?!! I've never seen a man sit on a woman's eggs!"



Interjection by my 11 yo old girl (who happens to be studying human anatomy and physiology this year): "Well, I guess Dad did not sit on Emma's egg long enough. She's tiny, out of albumin, and hatched too early."









------------------------------------------------------------------------------------------------- 8 yo girl reading her Bible: "Samson was the enemy of the Phil ... Phil ... Phillies (Philistines) and then sent a woman named De ... De... the Devil (Delilah) ...

Sabrina ... and the Terrible, Horrible, No Good, Very Bad Day

I decided to take my oldest daughter with me to the hospital, today. They do not allow anyone under ten years of age - she is eleven. We left the house at 8:30 - arrived at the hospital at 11:50! Traffic was ridiculous. It took us forty-five minutes to travel the length of 2 10ths of a mile. By the time we got to the hospital, I was spent, exhausted, on my last nerve. I had been up since 4:30. So, when we finally arrived, I just.wanted.to.see.the.baby. Imagine my ... chagrin when the security guard denied me a pass for my daughter, stating that the NICU was closed to all visitors except parents. Swine flu concerns.

So, I have an 11 yo, milk that needs to get to the NICU (and I ain't letting it out of my sight - it took too much effort to get that measly amount), a security guard who will not even let my daughter come up to the waiting room, and me - a mom who is just frazzled at this point and has no intention of turning tail and heading home. Now, lest you think I wanted to be the exception to the rule, or that I thought the whole policy stupid - while I am certainly glad that the hospital instituted this as a safety precaution, it was short-sighted to NOT notify the parents of the babies, given the fact that there are going to be at least some with siblings at home.

I decided to seek the assistance of the people in Admissions. They made some phone calls, and Social Services met with me -in the waiting room, the very room the security guard denied me access to. Social workers are not exactly high on my approval list. Their very training is so counter-productive, in my opinion, to what the world needs at this moment - less "me, me, me" , more "it just is not about me". And this particular social worker - with her dripping-with-honey voice and her need to constantly put her arm around me - just fit too well with my pre-conceived notions of social workers. It would have been a laughable moment if I was not so flustered.

(Please realize that my feeling toward social workers is more a bias aimed at the field of social work - based on my training as a clinician. In graduate school, we were trained in systemic therapies. If we truly wanted to "save the world", that, in a nutshell, would do it.)

The social worker's solution was to have my 11 yo sit in the waiting room and ... well, wait. Now, I could not help but feel it was ironic that, if I left my 11 yo unattended in the waiting room, that could be considered neglect - but since it was the social worker's idea, her okay, her stamp of approval, well, then, it was a perfectly government-sanctioned idea. (Yeah, I am jaded.) She would keep an eye on my older daughter while I visited with the baby. And, when the playroom opened, Sarah could go and play with the toys. Uh, hello, have you met any 11 year-olds? Sarah could be in charge of the playroom. She had three books with her, and began to read, thanking the social worker for her time and stating that she would be just fine.

This is really starting to read like a lambasting of social workers, and that is so NOT the point. (I will leave out the part wherein she visibly bristled when I admitted to the fact that I homeschool my children. Shhhh. And I won't discuss the fact that the social worker LEFT - yup, as in, FOR THE DAY - without a word to me.) I did get to see Emma, I did make it home safely, my older daughter was fine. That is what counts. Today was just another indication of how the baby is not really mine right now, and I need to relax, and let them take care of her - everyone from the nurses to the security guard, who had the interests of all the children in mind. Emma is doing okay, the edema is still a concern, she is still on Lasix, and requires blood transfusions to keep up her strength.

All this to say...

8 weeks down, who knows how many to go.